How to tell young children

[Savage27]

Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and that his daddy is sad but we are struggling to not let it affect him and I feel I need help to help him understand, what he can at his age.

[annmcgowan]

Hi Savage 27. I was diagnosed 9 years ago when my grandson was only 4 years old. We didn’t tell him anything about the CLL as we felt he was too young to understand. He is 13 now and knows grandma has a blood disorder. We have never said what kind or tried to explain it even when I started treatment.

CLL is difficult for adults to get their heads around. Many of my adult family still don’t understand how I have a blood cancer in treatment but am not unwell.

I know it is different for you as your son lives with you and can see on a daily basis that daddy is sad. In my opinion it is best to tell them as little as you can get away with when

as young as 3.5 years and keep it as simple as possible as they age. It has worked for my family so far and I now have 4 grandsons aged 13,9, 7 and 5.

Children are very resilient I find and can cope if you provide information that is age appropriate and does not overwhelm them unnecessarily.

I hope sharing my experience and strategy helps your family.

Good luck

Ann

[ygtgo in reply to annmcgowan]

... Children are very resilient I find and can cope if you provide information that is age appropriate and does not overwhelm them unnecessarily.

That is my experience.

My eldest had just started school when I had an eye injury/disease that left me 'photophobic'.

Exposure to light = eye pain.

It changed my world overnight ... nothing was ever the same ... I had a good paying job, active social life and suddenly it was all gone, no more work, car, friends were replaced with dozens of ' blind mans' glasses all of different shades, sometimes I have to wear 'double glazing to keep out the 'glare'.

I have to be in charge of my 'light environment' so my only real regret is not having been able to take them away on holiday as they grew up.

As far as my boys were concerned ... dad had sore eyes ... that's all.

30 years later the roles have reversed ... I'm not taking them a walk in their 'buggy' ... they're pushing me in a damned wheelchair! ... dad finds it too painful to walk ... that's all.

... as for adults. family/friends, I still get the "but, you don't look unwell" comments when it comes to CLL ... that one's easy ... just say " lets not allow a little bad blood to come between us" (puts them on the back foot)

... keep it as simple as possible ... I totally agree.

ygtgo

[Jm954 Administrator]

Hello and welcome, I see you've just joined and this is your first post. The pinned posts to the right have lots of excellent information for newly diagnosed CLL patients when you're ready to read them.

I'm in no way qualified to give any advice and I have no experience of such a situation but MacMillan have lots of resources including these

macmillan.org.uk/cancer-inf...

They also have a support line on 0808 808 00 00 which might be able to help you both.

Young children are usually surprisingly resilient but it's probably hard to know how much to say. The contacts above might be able to guide you.

If your husband is in the early stages of being diagnosed perhaps it will be best to wait a while until you know more about the situation.

Sending my very best wishes to you both

Jackie

[Poodle2]

Hi Savage27, sorry to hear you are going through this as a family.

I have just turned 40 and have 3 kids - 6, 3 and nearly 1. Our kids don't know about my CLL. My two younger ones are too little to even understand or to need to know in my opinion. My oldest son is very sensitive and emotional and I think it would stress him too much at this point to tell him I have an incurable disease. He cries just at the thought of him not being able to marry me and stay with me forever even without knowing about my disease 🙂bless him...he cried when we read a story about an orphan who lost both her parents...so I feel he needs to be older to know and maybe when I need treatment.

You know your child the best so you will know what he will be able to cope with. I chose not to tell them at this point.

He is curious when I go for blood tests and asks questions and I just tell him the doctor wanted to do a blood test to see if mummy is ok. That's enough for him at the moment. My 3-year old is totally oblivious to it🙂but your son might be different.

I do not talk about my disease with other people in front of them and when I'm upset and feeling down I don't cry in front of them.

Hope you find the right balance for your family. ❤

[mantana]

That is tough indeed.

I'm 42, and my son is now almost 3.5 yrs old - he grasps the concepts like "doctor", or "hospital", but that age is still too young for the kids to understand the real meaning of blood cancer (though a perfect opportunity to explain why washing hands and not touching our faces - to prevent mummy and daddy getting sick - is so important).

I remember once coming back from a routine CLL checkup from the hospital - my son asked: "Is daddy cured now"?

[Mldeterm]

We chose to wait to tell our children until we could talk about it non emotionally so they didn't feel our stress and panic. For us that was 2 yrs later and we felt like things were under control so we could honestly tell them dad has cancer but it's chronic, he'd be starting treatment soon but it wasn't anything like chemo like their grandma had before, etc. You have to do what works for you, but that's very young to explain anything in any level of detail to anyway. I'd personally just say "dad isn't feeling well" and leave a more involved talk when he's older and understands more or asks more questions. Good luck!

[Quarry]

It is a very personal decision when/if to tell. My kids were 10 and 12 when I was diagnosed (New Year 2012/3). Whilst kids are resilient, we took decision not to tell - several reasons, but they included that I did not understand what I had, nor what would happen: how on earth was I going to answer any questions??

A year later I had my spleen out (to stop AIHA caused by the CLL) and passed it off as 'my spleen has gone bad'. By the time they finally found out (last year) that I had CLL, not only did I understand better what I have, I could also show years of blood results that showed things were stable and reassure them I would not be gone tomorrow. For me, this strategy has worked out well.

[Research123]

I have an intelligent 12 year old daughter but don't really wish to cause her any worry unnecessarily. I've been on watch and wait for a year. It seems to me that none of us really know what the future will bring in terms of future treatments etc so why worry them about something that might be completely cured in the next few years anyway? I'm divorced and the covid has led to me being self isolated so for now am just speaking on Skype etc. I've explained that I have a dodgy immune system which explained without upsetting her why I can't see her . I think it's hard enough for us to understand we have an illness there's no definite cure for but I have faith in the future of medicine. That's a hard thing to explain to young chdren though.